Looking back at the year

It has been about 4 weeks since Kiera has had any episodes at all! That includes pain and panic attacks. We are so grateful that we have had such a calm month! We also hit the 1 year anniversary from when her pain first started. It was the Very beginning of March that it first hit Kiera. Mark and I have been very apprehensive, and nervous coming into March. I don't know if it was memories of when it all started that came flooding in, or if we thought maybe it would start all over again, but we were very nervous for a while.
So we are keeping our fingers crossed and praying that we have seen the last of all the pain stress.

As we have reflected upon the stressful events of the last year, I have found that the memories are still fresh, and hard to deal with! Which is odd when I think about it.
One of the strangest associations I have with the hospital is eating salad. That is one of the only things I was able to eat from the cafeteria, that was gluten free, and discovered that after we got home from the hospital, I can't stand even the thought of eating salad! I used to CRAVE it, and eat it a lot!!! But its been VERY hard for me to even look at it! Strange!

We also had one day where Kiera started talking about pain in her feet and hands, and both Mark and I went instantly into a stress overload, and shut down! We couldn't handle the thought of going through all that again!
What I found interesting about this was, I thought I had been so strong, and able to handle it... but I guess it was harder on me then I thought!

Its been such a blessing for things to be nice and calm recently! And with summer coming, we can plan for summer fun!

Relapse

Two days ago Kiera started complaining that her feet and hands were hurting. Last night her legs were tender when I tucked her into bed, and now her feet are having more pain.
We are praying we don't end up back in the hospital like last time!

Everyone's Happy She's home!

When Kiera walked in the door both her sister, and her dogs loved her over and over! Savannah wouldn't let go of her, and Daisy kissed every inch of her face at least twice! It was Very sweet to see!
After the initial excitement wore off, the two girls were connected at the hip for a long time! It was great! They played games, and giggled non stop!

The day Kiera was being discharged from the hospital Kiera, as part of her therapy, got to make cookies, then at the end of her therapy went into the therapy room and shared the cookies with all the therapists, patients, and nurses! It was great fun!














She had amazing people taking great care of her while she was there! They were ALL wonderful people, and we are VERY grateful for them all!

Relaxing at home

We have been home now for 9 days, and are LOVING IT!

The first hour Kiera was home, her and her sister couldn't hardly stop hugging, laughing, and playing little games. It was so touching to see those two having such a good time together!

We have all felt thankful that we were home to enjoy Thanksgiving with our family!
It has been an amazing thing to experience gratitude for all the little things, like sleeping in my own bed, having a lazy day at home, chilling on the couch with my dogs in my lap, even daily chores around the house!

Home sweet home!

Going Home!

We are SUPER excited to be going home today!
Kiera will finish her day of therapy, then she will be released!

As part of her therapy sessions today they are going to be standing, and making gluten free cookies, and then this afternoon there will be a going home party, and they'll pass out the freshly baked cookies!
We are so excited we can hardly wait!

We have been warned that there is almost always regression when sent home, then most times, they start going back up. So, I'm nervous about that, but I hope its something we can all handle!

Two nights ago Kiera had really intense walking in her therapy! They had her walk farther, longer and more frequently through the day, and that night she hurt so badly she wouldn't get her legs into bed! She sat on the edge of her bed and cried!
We talked about how bad it was, and I asked her, if a level 10 was like the day she came to the hospital, then where was she? She said 9! I was so scared, and worried! The nurses gave her all her pain meds that the doctors had said she could, but it never seems to do a thing! They gave her melatonin to try to help her get tired, but the pain just out weighed everything!
At 11:00 I asked if there was anyone in the building that can give blessings, and so the nurses sent out a page. (With as long as we have been here, it's something I hear several times daily, so I knew it was an option!)
So, around 11:30 two men in scrubs, one with a long goatee, came in and gave her a very comforting sweet blessing.
I don't remember what was said, I just remember crying through the whole thing because I was at my wits end! I try so hard to hold it together for Kiera, but some times, I just can't!
After that, the nurse came in, and we tried to put her legs up on the bed. It still hurt a great deal, but we got them up.
We had her bed in an upright position, like sitting, and put all her fluffy soft stuffed animals by her face. I caressed her face and head as she closed her eyes, and fell asleep in just a couple minutes!

The next morning she said her level was an 8 or 9, so still high.
The therapists came in to start therapy, and I was petrified with her pain level where it was how that was going to go.
They got her to stand, and she had no problem expressing her pain in her face. She even groaned and let out little whimpers! Then they started walking down to therapy.
Since I was no longer allowed to go down to therapy with her, I just waited in our room, very anxious!

When she came back to the room, she was walking better, and not expressing as much pain!
She said her level was at a 5! I was SO happy!
The rest of the day went well! Therapy was not as intense as the day before, so she also went to bed much better!

Today we are ready to go home!

YEAY HOME, HERE WE COME!

One more week here

We met with the team of doctors here and decided that we need to finish out what our insurance will cover for inpatient care. I think if our insurance covered more, they would want her to stay longer because she can get such a great routine of intense therapy all day!
After we go home, she will continue therapy in outpatient, but it will not be daily like it is here.
That would be better daily, but it doesn't work that way I guess.

Today was the most progress we've seen yet! They had her walk all the way to the elevators, go to the first floor, then to the other end of the hospital to see a HUGE ginger bread house. Then they walked back, and took the stairs, doing a total of 24 stairs!
WAHOOO!
That was exciting!

I don't have a picture for her therapy today because they are having me stay away to help her rely on expressing herself to the therapists, not me.
She is doing well with it so far!